Patients are always in the driver's seat

Patients who participate in clinical trials at SCCA understand their roles

Fall 2009

If you were one of the many patients who participated in a stem cell transplant via a clinical trial at the Hutchinson Center, chances are that you made this decision before you got here. At least, that is what patients are telling us today.

"The patients who came to the Seattle Cancer Care Alliance knew what they wanted to do before they even left home," said Kathleen Shannon Dorcy, research coordinator for the Hutchinson Center and director for Research Development for the SCCA.

This bit of important information was uncovered during a recent study that focused on informed consent. Co-authored by Shannon Dorcy and Dr. Denise Drevdahl, an associate professor with the nursing program at the University of Washington Tacoma, the study sought to understand how patients decide to take part in the research and treatment offered at the SCCA.

The usual model of informed consent works like this: a physician or researcher provides the patient with the facts and information about what is involved in the particular therapy or clinical trial. The assumption is that only after receiving all the information does the patient make a decision and then sign the consent form.

Questioning this assumption, Shannon Dorcy and Drevdahl conducted their study to understand how patients arrived at the final decision to have a stem cell transplant within a clinical trial.

After interviewing patients and their caregivers, they found that most patients were fully in control of their decisions by the time they arrived at SCCA. In fact, most of the patients in the study made the decision to have stem cell transplantation either before arriving for a consultation at the SCCA or during the consultation itself. When interviewed after the transplant, patients were quite satisfied with their decisions.

"Patients didn't have any regrets about participating in a clinical trial. In fact, it was valuable for them to make this decision," Shannon Dorcy said. "People come here for what is being offered to them. And patients come ready and with the energy to fully participate in the research."

Shannon Dorcy is continuing her studies of how patients make complex decisions involving both treatment and research. The study found that it remains important to learn more about how patients understand differences between research and treatment; how a life-threatening illness affects patients' understandings of research and treatment; and the need to re-examine the effectiveness of practices intended to ensure that patients are truly informed and prepared for research and treatment in cancer research settings.

When did you make a decision to participate in a clinical trial? Did you receive enough information to make a decision? Do you feel that you understood the difference between research and treatment? Comments would be welcome by e-mail to ltfunews@fhcrc.org.